If your baby is diagnosed with a heart defect before birth, it’s normal to feel shocked, scared or confused. First, take a breath. While the news may be unexpected, a prenatal diagnosis gives your health care team more time to plan for a fetal heart defect.
The next step is usually more detailed testing and a care plan with pregnancy, fetal heart and newborn specialists. That way, your baby can get the right care through the rest of pregnancy, delivery and in its early hours and days.
Michael Lewis, MD, a pediatric heart surgeon with Banner Children’s, explained what parents-to-be should know about a prenatal heart defect diagnosis and treatment. “Education is the most important thing, so you understand what’s wrong and how we can go about fixing it,” he said.
What happens after an abnormal ultrasound?
If your routine pregnancy ultrasound shows something unusual about the baby’s heart, the next step may be a detailed ultrasound or fetal echocardiogram to take a closer look at your baby’s heart.
What is a fetal echocardiogram?
A fetal echocardiogram (fetal echo) is a special, detailed ultrasound of your baby’s heart. It does not hurt you or the baby.
Fetal echo can show the heart’s chambers, valves, major blood vessels, rhythm and blood flow. It helps the care team understand what type of heart defect your baby may have and how serious it may be.
While a fetal echo can give a good idea of what to be prepared for, the diagnosis may change as the team gathers more information. You may need more than one fetal echo during pregnancy to get a clearer look at your baby’s heart and see how it is changing.
Who may be on your baby’s care team?
Managing a pregnancy with a congenital heart defect means you need the right care team. Because this is considered a high-risk pregnancy, your doctor may refer you to experts who can review the baby’s heart structure, blood flow, growth and any other findings. Your team may include:
- OB-GYN or midwife
- Maternal-fetal medicine specialist
- Fetal cardiologist or pediatric cardiologist
- Neonatologist
- NICU nurses and team
- Lactation consultant
- Nurse navigator, social worker or care coordinator
- Genetic counselor, if recommended
- Pediatric heart surgeon, if surgery may be needed
How the diagnosis may affect your delivery plan
The timing and type of delivery depend on the baby’s condition and the mother’s health. A heart defect does not automatically mean a C-section.
Your care team may recommend delivering at a hospital with the right newborn and heart care resources for all likely possibilities. They will decide who should be there at the delivery and what will happen right after birth.
Some babies may have mild defects that do not need treatment right away. Others may need monitoring, medicine, oxygen, NICU care, procedures or surgery after delivery.
Your care team can help you develop a birth plan that takes into account your preferences as well as your baby’s medical needs.
What care might your baby need after birth?
After birth, a baby with a heart defect may need a lot of evaluation and observation. “Very seldom do we need to operate within the first 24 hours of life,” Dr. Lewis said.
Care and treatment may include:
- Newborn exam and monitoring
- Oxygen level checks
- Echocardiogram after birth
- NICU or cardiac ICU care, if needed
- Medicine to support blood flow for certain defects
- Feeding support
- A procedure or surgery (for some babies)
- Follow-up with pediatric cardiology
- A monitoring and follow-up plan for home
Questions to ask after a prenatal heart defect diagnosis
“Ask whatever questions you need to ask to feel comfortable with your care,” Dr. Lewis said. That may include:
- What heart defect do you think my baby has?
- How sure are you about the diagnosis?
- What are the long-term expectations for my child’s development?
- What does my child’s future look like?
- Will I need a fetal echocardiogram or repeat testing?
- Are you concerned about anything else on the ultrasound?
- Will this change where I should deliver?
- Who should be at the delivery?
- What might happen in the first minutes or hours after birth?
- Will my baby need NICU care or heart surgery?
- Can I hold or feed my baby after delivery?
- What signs would change the plan before birth?
- Who do I call if I have questions?
How to cope while waiting for answers
Waiting between appointments can be hard. Asking your care team for information can help. It’s a good idea to write down questions as they come up, bring a support person with you to your visits and ask for information in plain language.
Ask your providers for a treatment timeline but understand that they can only give you their best guess. How your baby responds to treatment can mean things move more quickly or more slowly than expected.
It can be tough but try to focus on the next step, not every possible outcome. Avoid deep internet searching if it makes you more anxious. Ask whether you can connect with a care coordinator, social worker or support resources.
Bottom line
A prenatal heart defect diagnosis can feel overwhelming but it also gives your care team time to prepare. The next steps may include fetal echocardiogram, specialist visits, delivery planning and a newborn care plan. Some babies need care right away after birth, while others simply need monitoring and follow-up.
If your baby may have a heart defect, Banner Health’s providers can help you understand the diagnosis, plan delivery and prepare for your baby’s care after birth.
FAQs
Can a heart defect be diagnosed before birth?
Yes. Some congenital heart defects can be suspected on a pregnancy ultrasound and evaluated further with a fetal echocardiogram.
Does an abnormal ultrasound mean my baby definitely has a heart defect?
Not always. An abnormal ultrasound means more testing may be needed. A fetal echo or repeat imaging can help confirm what is happening.
What does a fetal echocardiogram show?
A fetal echocardiogram shows detailed images of the baby’s heart, including structure, rhythm and blood flow.
Will my baby need surgery right after birth?
Some babies need newborn heart surgery or a procedure after birth but most do not. It depends on the type and severity of the heart defect.
Can I still have a vaginal delivery if my baby has a heart defect?
Often, yes. A heart defect does not automatically mean a C-section. Your delivery plan depends on your health, your baby’s condition and the care team’s recommendation.
Where should I deliver if my baby has a heart defect?
Your care team may recommend delivering at a hospital with the right newborn, NICU, pediatric cardiology and/or surgical support for your baby’s needs.
